It's somewhat difficult to wrap my brain around the fact that we've had Lyra at home, by ourselves, for a few days now. I'm back at work now too, so now it's a little strange to leave Maren and Lyra in the morning. Even stranger is coming home in the evening and going about things almost, but not quite, the way we used to before she was born.
The schedule we're working on is for me to give Maren a break when I get home and then for her to get some sleep from 9ish to around 1am and then she's back on for the night. I think we might have turned a corner with Lyra's sleeping schedule. She slept most of last night, so Maren got a little more sleep. It's a harsh schedule though. Even if Lyra slept for a number of hours in a row (hasn't done that at home, but she did it often in the hospital), Maren would still be getting up every 3-4 hours to pump. I've promised her that when she stops breastfeeding, she'll get a whole weekend to sleep.
Lyra's first post-hospital doctors' appointments came and went without much fanfare. Her Cardiologist seemed pleased with her progress, which was reassuring. The only minor bummer was that he decided that Lyra should stay on oxygen for at least another week. The cannula she has to wear for that is hard to keep taped on because her grabby little hands are always trying to pull the tube off, which of course pulls the tape off of her face and that makes her mad. She also had her first appointment with her Pediatrician. It was good to meet her, but I don't think we'll be scheduling two appointments on the same day again.
Lyra has gained some weight, which is fantastic, but dealing with the feeding tube is a real hassle. Maren and I hope to keep working with her to get her either fully breastfeeding or bottle feeding. She's progressing very well, all things considered. She seems to be doing better on the breast than the bottle. She'll breast feed even if she's only moderately awake, but for the bottle she needs to be pretty much wide awake to be interested.
Some site notes: I've added a link to our Lyra gallery. I know a lot of people have asked us about pictures, so there you go. The software I'm using for the gallery also links to Shutterfly and EZPrints, which are Internet photo printing services. We don't get any kickbacks or anything, it's just an easy way for people to get prints if they want them and don't have access to their own printer. To access either service, click on a picture. In the upper right corner is a pulldown menu for selecting the service. I've not used either of them, but the Shutterfly site seems more professional looking to me.
I've also added a few links to the side menu for HLHS info and our email addresses.
Hopefully I'm not jinxing anything by stating publically that Lyra is coming home tomorrow. I suppose I'll try to head it off by qualifying it to read thus; According to one of her Cardiologists, Lyra will be monitored tonight and unless anything happens that would prevent her from leaving, she will be discharged tomorrow.
Of course, Maren and I are pretty excited to get the heck out of the hospital. One thing about having been there for nearly 2 weeks, is that no one can give us the ol' parental-insider talk about how much sleep we're going to be missing. We now have more experience in the art of sleep deprivation than we would like.
A Murphy's Law moment occurred today. With the news of Lyra's immanent arrival at home, it was time for me to put the crib together. Naturally, half way through assembly I realize that it's not the right crib. I might have noticed earlier, like as in days earlier, except that Maren pretty much made the choice and I have to admit I probably wasn't paying attention at the time, as long as Maren liked it, it was fine with me. Later, I picked up the the crib from the warehouse around 7pm. They were closing up and of course wouldn't help me tie it down to the roof of the car. After getting it home I really didn't look at it again until today. Luckily I remembered that it had a drawer on the bottom and the side rail was movable, otherwise I might have completed it's construction, happy with getting that job done.
Lyra is progressing steadily. She's beginning to learn how to feed from a bottle. Breast feeding may end up being too work intensive for her, but yesterday she managed to take about a third of her milk from a bottle. The therapists who are helping us (and her) are impressed with her stamina and getting her to take more seems to be a reflux problem and not because she gets too tired. When I was feeding her she got to a point where she just didn't want any milk coming out of the bottle; still wanted to suck, but didn't want to swallow anything. We're confidant that this will improve, maybe greatly improve, once she's home.
Speaking of going home, it may happen this week or maybe over the weekend. It's definately looking like we're going to be dealing with a feeding tube and possibly some oxygen issues. Her oxygen saturation is usually pretty good, but when she's completely asleep it tends to fall below a specific threshold. She's still on a tiny amount of oxygen, and from what everyone says it's almost nothing, but she still seems to need that tiny amount. With all of that being said, if these are our major problems we have to deal with, I'll take them.